A blog about raising kids on the spectrum, working with kids on the spectrum, friends on the spectrum. And lots more.

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Tuesday, August 23, 2011

Baby Behaviour, ASD and Outcomes? Where's The Studies?

For all the studies undertaken in trying to understand Autism, I sometimes find myself frustrated by the aspects that are not explored. Or at least that I have not yet managed to uncover. The two big ones for me are the differences between children and adults on the spectrum who were clearly born ASD compared to those who were seen to develop normally then regress. And the differences between those as babies who were difficult versus those who were placid. And while I list these two as separate issues I expect there is some overlapping.

I raise this because these differences seem to point to more than temperament. The ASD babyhood story tends to go one of two ways. Either the one where parents rave about what an easy baby their child was. How he or she would happily lie in the bouncer for hours, never cried, and was generally low maintenance. Then there's the stories like mine with Harri. The baby that cries from the moment he is born and doesn't really stop from that point in. At least that's how it feels to the shell shocked parents. Initially colic is blamed, but then the three month mark comes and goes and you are still swinging, bouncing, carrying this crying baby, who rarely sleeps, needs constant motion, seems simultaneously over and under stimulated.

I felt quite alone in my parenting nightmare when Harri was a baby. No one could relate to what it was we were experiencing and advice about routines and sleep training were of no value, in fact they exacerbated my sense of bewilderment and frustration. This was my third child, so I knew something about caring for babies, but Harri had me baffled. Several trips to the doctors revealed no cause, and also no alarm bells. Just a fussy baby with a neurotic mother. A mother who got a label first, being Post Natal Anxiety. And was packed off for counselling, which did not prove helpful because I still had this miserable child to return to each time. It took a label for Harri to put it all into perspective.

Imagine then my sense of validation when recently reading Born On A Blue Day by Daniel Tammet, an Autistic man with extraordinary savant talents. In it his parents recall Daniels early months,

"Yet my mothers first days with me at the hospital were not as she had imagined them. I cried constantly for hours at a time"
and
"Another means my parents found to relieve my crying was to give me the sensation of motion. My father regularly rocked me in his arms, sometimes for more than an hour at a time."
and
"In their despair they often put me in a blanket, my mother holding one end and my father the other and swung me from side to side. The repetition seemed to soothe me."

I could have written these very words for Harri. I am in no way suggesting he is a savant (or that I swung him around the room in a sheet as tempting as it was at times), in fact I am certain he is not, but the behaviours shared by Daniel and Harri as babies are remarkable in their similarity. I know there are many more stories out there like this and I cant help wonder how the children who started life this way tend to progress? Has there been any research that looks at the trajectory for kids who start out easy versus kids who like Harri and Daniel do not? What neurological differences account for some babies on the spectrum being able to happily absorb their surroundings and not feel the pressing need for motion, compared to those babies who appear overwhelmed while also physically under stimulated?

Harri is now a sensory seeker, he still loves the sense of motion, be it on a swing, or simply in the car. However he is not overwhelmed by sensory input the way many others on the spectrum are. He can manage busy shopping centres with ease, in fact he enjoys them, he manages transition well for the most part, and can focus reasonably well for short periods of time considering he is not yet three. He is not the hyper sensitive, over stimulated, sensory overloaded kid he was. He has a bright trajectory.

There was no regression, he did hit his baby development milestones on time, albeit just, apart from speech. He was a kid clearly struggling from the get go. His story is so different from the ones where the child appears to be NT in every respect than backslides. I know each person with ASD is different and that parent recall is notoriously inaccurate, but these startling differences are so distinct that surely they offer a key in understanding Autism better? Maybe I am being a non sciency simpleton here and missing something? But I am left mystified as to why the above issues do not generate more interest from researchers.

(I would be most thankful to anyone who could point me in the direction of any relevant research)

9 comments:

My daughter was one of the good babies, but now I realize that some of her “good” traits as a newborn were really signs of autism. She did not regress, she just never gained any words or gestures (until later). When she was diagnosed they told us she would probably never speak, and if she did it would not be normal. I don’t think they have any idea.

This doesn’t actually answer your question, but it does relate to outcomes and it is interesting. Warning, you have to download a pdf. Developmental Patterns and Outcomes inwww.icdl.com/dirFloortime/documents/200cases.pdf

Have you read The Special Needs Child by Stanley Greenspan? He has some very positive things to say about how to look at progress.

My son was seen by some as an "angel baby" early on, because he slept so much, and slept through very early on compared to other babies. He was content to be left alone a lot, or rather, upset to be disturbed or put in different situations. In some ways he was the mythical baby people dream of - sleeps alot, quiet, etc. It soon became clear that something wasn't right though since he didn't wake to the usual cues that other kids would, which lead to the early theory (on behalf of others) that he was actually deaf.

Of course that angel baby thing was well and truly out of the window before he was three; he'd become an absolute nightmare.

I think you're right that a clue to the puzzle for the differing children is in their sensory issues. My son's OT did a sensory write-up (and I've done my own research) that shows he is in some ways sensory seeking, in other ways (other senses) sensory avoiding. In turn, in some ways over-reactive, other ways under-reactive. I think the way we respond to our children's sensory needs - and challenge what our children are comfortable with - can greatly affect the type of child we have. I wonder how much that accounts for the differing "typical autistic baby." Just some thoughts anyway.

Great post (indeed, great posts, I haven't commented on your other recent posts but I've been really enjoying reading your recent thoughts and experiences).

THanks Christy and a&o for your stories and thoughts. So there clearly is, as I mentioned in the first paragraph, overlapping between the easy/ difficult baby and the obviously ASD baby with no regression/ regression path. And despite all our kids taking such a different path there were signs in retrospect as babies (either too placid or too demanding to be 'normal') of ASD. At the very least there is something in that for early childhood care providers/nurses. Your stories bring me back to the questions again. There is something here about how our kids are able to manage sensory integration. It must at the very least impact on their ability to engage and learn.

This frightens me. We just adopted a baby, an extremely sweet baby who's two weeks old. He didn't even cry during his circumcision today. I don't want to create problems where there aren't any, but it was a bit alarming. I pray he's just a really laid back baby.